INTRODUCTION
A subset of patients with advanced medical disease express
a desire for hastened death (Doyle et al.,
1998; Miller et al., 1998; Chochinov et al., 1999; Rosenfeld
et al., 1999; Van Loon, 1999; Barrio, 2000; Breitbart et al.,
2000; Emanuel et al., 2000; Varghese & Kelly, 2001). Some patients request
physician-assisted suicide or euthanasia. Others exhibit signs of suicide
ideation or express the wish for death to come quickly. Although psychological
symptoms, such as depression and anxiety, have been closely linked to
the desire for hastened death, other factors are also important and can
influence patients' will to live. These include hopelessness,
social isolation, feelings of helplessness or loss of control, prior
psychiatric histories, substance abuse, poor family supports, and inadequate
symptom control (Doyle et al., 1998; Rosenfeld et al., 1999; Van Loon,
1999; Barrio, 2000; Breitbart et al., 2000; Emanuel
et al., 2000).
Desire for death has been shown to fluctuate in patients with
advanced disease. It is not uncommon for patients to vacillate at
end-of-life, with some moving from a desire for death to an expressed
wish to live (Chochinov et al., 1999; Breitbart et al., 2000). This suggests that
mitigating factors can affect the desire to live. It also highlights
the importance of continuity of care, with ongoing assessments and
interventions, for this subset of patients (Doyle et
al., 1998; Miller et al., 1998; Van Loon, 1999; Varghese &
Kelly, 2001).
The wish to hasten death introduces a complex dimension to
end-of-life care. To illustrate this challenge, a case example is
presented wherein suicidality and intent diminished as treatment
strategies were implemented and effective relationships with health
care practitioners developed.
CASE REPORT
Mr. V., a 49-year-old patient with neck and tongue pain, was admitted
to the hospital for evaluation and diagnosed with head and neck cancer.
Doctors advised him his prognosis was favorable if treated with
surgery. His hospital roommate had undergone a similar procedure and
described a negative outcome after two surgeries. Mr. V. reacted with
distress and fear, refusing surgery and leaving the hospital against
medical advice. He left precipitously, still in his hospital gown.
Three months later he was readmitted for bleeding and pain in
addition to other symptoms such as fatigue, excessive saliva, and
difficulty eating. Requesting pain medication he refused all other
treatment including surgery and radiation treatment. He expressed anger
with staff when a urine drug screen was requested. This reaction
combined with the refusal to accept treatment resulted in a psychiatric
consult to assess capacity. The psychiatrist reported that although
capacitated, he was suicidal. Compounding this was the patient's
difficulty communicating with staff because of dysarthria and pain
caused by the disease.
On the last day of his admission he was referred to the pain and
palliative care team for consultation. When the consult team explored
his risk for suicide he denied any suicidal thoughts. He was motivated
to communicate with them because of his need for adequate pain
management, including assistance with financial resources because he
had no insurance or money. Advocating for him at discharge, the team
began to establish trust by focusing on his immediate expressed needs.
They coordinated appropriate prescribing of medication, obtained an
emergency 2-week supply, and provided education on the medication
regime. An appointment was also set for outpatient follow-up. These
interventions sent a message of the team's commitment to his
continuing care and respect for his articulated priorities.
During subsequent outpatient visits, Mr. V.'s story gradually
unfolded. He was healthy prior to the cancer diagnosis despite smoking
for 40 years and drinking vodka and six beers a day for 30 years. He
had not seen a doctor for 25 years and waited for months to see one
after the pain began in his neck and later in his tongue. This stoic
reaction and ability to endure were consistent with his history as a
Czech freedom fighter brought to the United States by Amnesty
International in 1980. Family members, including his mother, his
children, and their mother, remained in the Czech Republic. He refused
to speak of them except to say his mother should not be contacted.
Mr. V.'s living situation and ties to social support were
tenuous. Forced to move after finding his roommate shot in the head, he
lived in the unfinished attic of a friend's house. It had no
running water or phone. Illegal activities occurred in the house that
precluded him accepting home or hospice care. Other than the family
with whom he resided, the patient identified one friend who
occasionally loaned him his cellular phone and sometimes helped him
communicate with the team by speaking to the social worker and passing
on her messages.
The confusion and communication barriers Mr. V. experienced became
apparent by the second outpatient visit with the social worker. Of his
own accord, he brought two illustrations he had rendered of the
trajectory of his disease. The diagrams showed his tongue as healthy,
then developing a cancer-related crater that grew progressively larger,
and finally with the tip cut off twice for biopsies. A note on the
second drawing stated, “This part [of the tongue] was
cut off TWO TIMES! WHY 2X!” intimating his anger with the health
care system. Another note, “BOTH TIMES IN HOSPITAL THEY GAVE ME
RADIATION,” expressed the belief he was treated with radiation
against his wishes and despite his objections. Because hospital records
showed that pain medication was the only treatment he received, it is
likely he mistakenly thought diagnostic tests, such as computerized
tomography (CT) scans, were the radiation treatment he had refused.
Mr. V. also shared, during this second outpatient visit, his
conviction that he would die within weeks or months. He stated that
when the time came he would put a bullet in his head. He denied any
immediate thoughts of suicide and said he did not have access to a gun,
although his environment seemed to be one where a gun might be
available.
The patient's case was brought back to the pain and palliative
care team meeting to discuss his plan to kill himself “before it
got too bad,” to create a plan, and to provide supportive
guidance to the social work clinician who had become the primary
therapeutic contact. The team undertook the task of understanding the
multidimensional aspects of his case. They assessed the impact of his
history and lifestyle on the level of care. The illustrations he
provided of his disease progression were distributed to team members.
His background as an immigrant, his relationship to authority, and his
trust issues were all discussed. After careful consideration, the team
determined that there was no immediate risk and that emergent
psychiatric intervention was not necessary. They focused on setting
preliminary goals of care designed to support the patient and
clinician, provide vigilant and careful prescribing of pain
medications, and demonstrate a commitment to the patient's
expressed needs.
The first priority in patient care was pain control. The social
worker engaged him by offering to assist with applications for
financial health benefits for pain medications through Medicaid, a
social service agency, and pharmaceutical company patient assistance
programs. During the first outpatient visit she arranged for him to
meet one of the team's physicians in order to assure continuing
medical care. Subsequent visits were held with both the social worker
and the physician, and always occurred on the pain and palliative care
inpatient unit.
The physician's assessment included an inquiry regarding current
drug use. Mr V. admitted to the use of cocaine, which he got from a
friend who was a dealer, once or twice a day. He said it helped with
pain and the medication side effect of drowsiness. He stated that he
would use cocaine even if the pain and drowsiness were better
controlled. He also said he drank alcohol.
The patient was prescribed both long-acting (Duragesic patch) and
short-acting (morphine sulfate immediate release) opioid medication. He
was prescribed Robinul for excessive saliva. Fatigue diminished as
controlling the pain eased his difficulty with eating. He was scheduled
for biweekly visits to allow for regular reassessment of his pain,
suicidality, substance abuse and use of prescribed medications. Mr. V.
was instructed to bring receipts for medications purchased and
medication usage was reviewed at each visit. He had no phone or means
of transportation. Appointments were sometimes missed. To ensure
consistent care, regular follow-up was conducted, particularly after
missed appointments, prompt rescheduling was facilitated, and every
effort was made to accommodate him if he came late or at unscheduled
times. The structure, outreach, and availability of staff served to
increase his feeling of being cared for by the health care system.
Contemporaneously, the social worker and physician worked with Mr. V.
to explore his wishes regarding end-of-life care. Besides regularly
assessing his wish to live, this included obtaining a written health
care proxy and documenting his do-not-resuscitate status. When he was
admitted on an emergency basis to another hospital, the social worker
and physician communicated with the treatment team there to ensure that
his wishes were honored.
Two months after beginning to work with the team, the patient
requested admission to the pain and palliative care inpatient unit,
familiar to him from outpatient visits. His condition had worsened
since his last visit 1 week earlier. Pain had increased accompanied by
sleeplessness, and his ability to communicate had deteriorated due to
cognitive changes. The social worker provided support and expedited the
admission process, talking with staff and assisting with the transition
of care to the nurses and physician on duty. After admission, Mr.
V.'s pain was controlled and he eventually relaxed and went to
sleep. He died early the next morning.
DISCUSSION
When the pain and palliative care team met Mr. V., he was socially
isolated and chemically dependent, his symptoms were inadequately
managed, and he was experiencing loss of control related to his health
care. He admitted to using cocaine once or twice a day and drinking
alcohol. He was suspicious of medical practitioners whom he thought had
given him radiation treatment against his will. Until he met the pain
and palliative care team, he refused to engage with hospital staff.
Although reported to be suicidal, he did not seem to be at imminent
risk of suicide. Therefore, the initial intervention started where the
patient was, focusing not only on helping him obtain symptom management
and medication, but also on promoting his engagement with other health
care professionals. The team's aggressive symptom management and
commitment to his care helped him see alternatives to his plan for
suicide. Symptoms effectively managed and no longer in conflict with
health care practitioners, his isolation decreased and he ceased
discussing suicide. When questioned he denied thoughts of ending his
own life.
Respect for autonomy, self-determination, and beneficence, the
ethical principles underlying the team decision-making process, were
key factors in selecting appropriate interventions for the patient.
These principles ensured that the team's first priorities were
symptom management and advocacy for medications, communicating their
commitment to his care, and demonstrating their expertise in not
allowing “it to get too bad.”
Also important was the team's attention to his end-of-life
wishes. Formal documentation through health care proxy and
do-not-resuscitate forms concretely represented their support for his
decisions and put the control of his health care back in Mr. V's
hands. The team's advocacy for him within the hospital and when he
was admitted to another institution further demonstrated their ongoing
commitment to his choices.
The team collaboration, support, and decision-making process helped
to create a flexible approach to the patient's care that allowed
for consideration of his individual needs. Despite known substance
abuse, pain medications were provided. Mr. V. was closely monitored and
frequent appointments were scheduled to provide a structure that
ensured safe use of medications. This approach was the basis of an
effort to build a gradual, trusting relationship.
CONCLUSION
The literature recommends immediate attention by clinicians,
including assessment of risk and appropriate intervention, to patients
expressing a desire to hasten death (Doyle et al.,
1998; Miller et al., 1998; Van Loon, 1999; Varghese &
Kelly, 2001). Miller et al. (1998)
present an assessment model designed to help clinicians understand
patients' desire for death. Van Loon (1999) suggests that expressing a wish for death may
be a way for patients to gain control over their circumstances and deal
with the uncertainty of death and dying. The ensuing discussions can
promote coping as patients communicate their concerns and request help
with specific problems, such as symptom control. Other professionals
(Doyle et al., 1998; Van
Loon, 1999) emphasize the benefit of allowing patients to
express their desire to hasten death, establishing a rapport that
allows for open discussion, and addressing concerns by means of
normalization, validation, and practical interventions.
Varghese and Kelly (2001) report on various
studies related to the wish for death in terminally ill patients. These
studies indicate that suicidal thoughts are not necessarily linked to
severity of illness. Social isolation, chemical dependency, lack of
family support, inadequate symptom control, and feelings of loss of
control and helplessness are all predictors of suicide in terminally
ill patients (Doyle et al., 1998; Rosenfeld et al., 1999; Van Loon,
1999; Barrio, 2000; Breitbart et al., 2000; Emanuel et al.,
2000; Varghese & Kelly, 2001). Of the
many factors affecting the desire for death, Varghese and Kelly (2001) surmise that patients' relationships,
including those with their doctors, play an important role and have the
potential to profoundly affect how they perceive their situation.
This patient embodied all the predictors reported by Varghese and
Kelly. Despite this, with the pain and palliative care social worker
and physician working together to manage his pain as a primary goal,
suicidal ideation was not ultimately an issue. The team's
willingness and ability to respond to his most immediate fears and
expressed needs and to act as an advocate for his health care
priorities resulted in adequate management of pain and empowered Mr. V.
in an area where he previously felt no control. The team's
concrete and symbolic interventions created avenues of support and
connection, decreasing his isolation and mistrust. This case
illustrates that relationships are a key factor in the fluctuating wish
to die (Varghese & Kelly, 2001). The
patient's relationship with the team allowed him to receive the
care he needed and to die a relatively peaceful, pain-free death, on
his own terms.
ACKNOWLEDGMENTS
The author would like to thank Terry Altilio, ACSW, Myra Glajchen,
DSW, Russell K. Portenoy, MD, in the Department of Pain Medicine and
Palliative Care, Beth Israel Medical Center, New York City, and David
Wollner, MD, in the Department of Palliative Care Services at the
Veteran's Administration, Brooklyn, NY, for their help and support
with this article.
